If you’re in a car accident and end up in hospital for a bit, when you get home, you rest and get better. You break your leg, you don’t rush around to get things done, you rest and let things heal. When you have a stomach bug, you sleep because a bug wipes you out, you get very tired and you’re poorly.
But when you have an illness for the rest of your life, like fibromyalgia, crohn’s disease, EDS, CFS/ME and so on, you’re expected to get on with your life and you do. You can’t sleep it off, you can’t take some meds and get over it and carry on. It stays with you for the rest of your life. It has it’s ups and downs but you can’t escape it. You still have to get up every morning and carry on, no matter how little you slept last night, how much pain you’re in. The biggest part of being an adult is the responsibility and the fact that you just gotta get on with things.
Norovirus, for example, is horrific and I’ve heard people talk about how awful it is and you feel like you’re dying but after a few weeks you’re over it. What if you’ve got lupus though and those few weeks become the rest of your life?
The fatigue you get with fibromyalgia is not something you struggle through during the day, go to sleep at night and wake up feeling refreshed. I don’t remember the last time I felt refreshed. You struggle through, sleep or don’t sleep and continue struggling. You live your life on auto pilot, you just have to find a way to cope. You can’t just sleep it off.
When i’m in pain with my fibromyalgia, it can hurt for someone to even touch my skin. I have days where I can’t even hug my family, the cat can’t sit on my lap and even I hurt me by just being me. It hurts to be in my skin, it hurts to have skin! Pain that doesn’t need to exist does and it’s frustrating because I can’t escape that. A person with fibromyalgia is affected by pain more than a healthy person. You could be punched exactly the same as me and days later, i’ll still feel that pain from the punch, whereas you would get over it minutes afterwards.
I can take tablets but that doesn’t cure it or make it go away completely – it just eases it. People constantly tell me to just take painkillers, but surely if painkillers worked, I wouldn’t complain, I’d just take them. Besides, it’s trial an error, I have to find the correct tablets for me but that takes time and work and i’m trying.
I can’t escape from my body. I can’t go to sleep and forget about it all. I can’t take a nice, long holiday and relax. This is my life and I need people to be patient with the fact that I am struggling some days, I do get upset and grumpy.
You get grumpy when you’re sick and I do too. A lot of the time i’m bouncy and smiling no matter what but that doesn’t mean i’m not in pain and some days it gets too much and I cry and get upset. I don’t mean it, it’s frustrating. Goodness, even the laptop on my legs hurts right now whilst typing this. My arms are aching just from the movement. Even the backs of my legs hurt from just touching the sofa. I stand up, it hurts, I sit down, it hurts.
A lot of my friends have turned their backs on me since my health has gotten worse and I go weeks with out anyone talking to me (outside of work and family.) I’ve learnt to accept that and not let it bother me. I’m learning to be as independent as I can but it’s difficult.
It’s lonely being poorly and people don’t understand, it’s even lonelier when no one even tries.